Young adult patients’ experience of living with mechanical circulatory support: A phenomenological hermeneutical study

Abstract

Aim To describe young adult patients’ experiences of living with a mechanical circulatory support (MSC) as a bridge to heart transplantation and impact of self‐efficacy. Design A qualitative and explorative interview study. Methods Eight interviews with adult participants were conducted and analysed using the phenomenological hermeneutical method. Results An overall theme, “Navigating from helplessness to feeling strong in the new reality,” and three themes were identified: “Feeling homeless in a changed reality” describes the experience of suddenly falling ill and the loneliness caused by the disease; “Finding my own inner resources” shows that the interviewees found the strength to fight for their lives and began to regain control of their situation; and “Adapting to my new reality” describes the importance of finding strength from others and being able to see MCS as a friend providing respite from the disease. Self‐efficacy beliefs play a significant role in the process that the participants went through.

Ethical issues surrounding mechanical circulatory support

“…According to a patient on MCS, feelings of powerlessness stemmed from being "hooked up to a machine that kept you alive" and having to place full trust in health care professionals. 18 Due to the invasive nature and critical illness surrounding MCS, psychiatric comorbidities such as depression or anxiety are not uncommon in MCS patients. 19 One patient described having panic attacks over seeing tubes connected to their body and being constantly aware of the presence of the pump "invading" their body.…”

“…Studying the subjective experience of MCS is important to understand patient decision-making and act ethically under the principle of nonmaleficence. Through interviewing patients who had experienced living with MCS, common themes have emerged: feelings of helplessness, loneliness, decreased self-efficacy, and newfound inner strength in enduring MCS 18. Fortunately, despite these negative feelings, many LVAD patients agreed that they would make the same choice if they had to do it over again 8…”

The Meaning of Surviving Three Years after a Heart Transplant—A Transition from Uncertainty to Acceptance through Adaptation

“…Being an adult MCS-recipient means a liminal existence [ 2 ] and vocational adjustment [ 3 ]. Young adult patients receiving MCS navigate from helplessness to feeling strong in their new reality [ 4 ]. Some patients receiving MSC might prefer to continue it even when transplant becomes an option [ 5 ].…”

Factors associated with body image among patients with an implanted left ventricular assist device

“…5 Following implantation, patients experienced their body as different, were disgusted by their own body, felt ashamed by their changed appearance, and felt that their body had been invaded. 6 On discharge from the hospital, along with the positive outcomes of the LVAD support, patients reported feelings of awe and dismay when looking at themselves in the mirror. 7 Almost half (47%) the patients felt that the LVAD negatively affected their selfimage, which more than half thought was important for sexual satisfaction.…”

“…11 Among young adults living with mechanical circulatory support, feeling trust and confidence in the ventricular assist device and seeing it as a friend were among the main themes identified. 6 A systematic review by Adams et al (2015) reported on LVAD ability to improve patients' quality of life. 12 Among LVAD supported patients with totally implantable or extracorporeal LVAD, quality of life scores were highest among the totally implantable group.…”